i'm losing my mind. please help

Kidney and urinary tract
1

about 2 months ago i got a really bad UTI. it took over a month for it to go away. apparently the first antibiotics killed the bacteria off, but i was still experiencing symptoms of it and had to take two other kinds of antibiotics. the urologist i visited explained that i was experiencing bladder inflammation from the UTI.

however right now i have symptoms again. i am so uncomfortable. it always feels like i have to go pee. i'm on Macrobid but i don't feel relief. i haven't gotten my culture back yet.

what do i do? i'm honestly losing my mind. i don't know what to do anymore. it doesn't seem like the regular doctors know much about UTIs other than just prescribing antibiotics. and getting an appointment w/ a urologist takes so long. 

2

Hi, I know what you are going through.

I've had uti's all through out my life since I was 16 years old, and it gets tiring, fast.

I had a bad one last year, and I decided to go the natural route this time. Instead I found out it was a thinning of the bladder/uterus lining due to all the problems I use to get with UTI'S. I purchased probiotics for the flora tract, everything, and than I really did some research while in agonizing pain and found out that Marshmallow Tincture by St.Francis Herb Farm worked for me. It coats the lining of the bladder and uterus, while letting it heal at the same time. I suggest you give it a try, you can find it at your local health food store. Its a liquid and comes in a bottle dropper bottle. You can also get it in pill form, but Im not sure how quick and effective it is. Also, take D-mannose powder as well.

3

just realize that when you have a uti, its sexually transmitted so while you were treated, both you and your partner need to be both treated at the same time. Your partner probably has a uti without symptons. both you and your partner need to take 1 lindens probiotic max per day  and 1 linden supergarlic twice daily for at least 2 weeks then continue both once daily for 2 weeks extra total 4 weeks.

4

Try  "HIPREX"  ( = METHENAMINE  HIPPURATE)  on prescription from a g.p.  This was the only thing that cured my almost- constant  UTIs  when even strong, high- dose antibiotics taken for a fortnight failed.  I still take HIPREX  now,  as a preventative, and have not had a single infection for over  3 years.  It appears to have no side-effects, and seems suitable for everyone except people with a type of kidney disease. You swallow 2 little tablets daily.  Look it up on Wikipedia.  I'm amazed that so many g.p.s haven't heard of it.  Neither D-Mannose nor cranberry juice did anything for me.  Good Luck.

5

Hi bianca

I had a problem a few years ago where i literally got uti every week and i could not understand why. I ended up being on antibiotics everyday for 2years to prevent me from getting a uti. I asked the doctor why i was getting them as i was also going out of my mind and his response was that some people are prone to getting them but i hadnt had a problem with them at all at any other stage in my life. I went on holidays and realised for the few weeks that i was gone that i had no symptoms and felt perfect again. The only thing i changed was the fact that i was drinking bottled water and not tap water. When i returned from my travels we had the water tested and it turned out that there was high levels of e-coli in the water and thats what was causing my infections as i drink alot of water. I now only drink bottled water and have not had a uti for about 2 years now. I hope this helps you.

6

Hi Bianca 569, 

You don't say whether these UTI's are new for you, or if you've had some in the past. There is a condition called "Interstitial Cystitus" which is often diagnosed after a great many "bladder infections." I put that in quotes because sometimes they aren't really infections--they FEEL like terrible infections, and there may even be a few red or white blood cells in the urine-- but really not enough to treat--yet it is often treated anyway because you are in terrible PAIN!  I no longer remember the exact cause of the condition--might be a reaction to too many antibiotics--but what concerns me is when you say your doctor said your bladder lining was "inflammed."  In Interstitial Cystitis, inflammation and tiny sores actually develop on the inner lining of the bladder and I can tell you from experience it is quite painful, but at the same time hard to describe exactly where the pain is coming from. I saw my GP, OBGYN, even a gastroentologist before someone finally figured out the problem was in my bladder and I needed a  urologist. This process took somewhere between 2- 3 yrs!!. I felt like I had a bladder infection all the time, could rarely empty my bladder completely, had lots of pain and burning. Here's what I learned from the urologist:  (even if you don't have this exact condition, I think what I'm going to tell you will help. )

The doctor prescribed a medication for me, plus a dietary change. I looked the med up on the internet and decided against it because of the side effects, and I've  managed to reverse the condition with diet alone.  Unless you are vegan or vegetarian, most Americans tend to eat a lot of meat and dairy, which are highly acidic foods. Our bodies are healthier when we make an effort to cut the acidity level by eating more alkyline foods--mainly fruits/veggies.  You don't have to cut out all meat/dairy/ and other acidic food like wine and chocolate, but you learn to find the right balance for you. The best website to help you is rense     There you will find many charts that list the acidic /alkaline values of most common foods.  What you can't find there, you can just google.  I have been using  this method successfully for about 3 yrs now.  Hope it will help you in some way. One thing I will also mention-- found out that cranberry juice is the absolute WORST thing to take for UTI's because it is very high in acidity! 

Best of luck to you!

 

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7

thanks so much! i'm going to go buy that tomorrow. hopefully it helps

8

okay, thanks so much. i didn't realize this. should i make my bf get tested?

9

thank you! i am going to discuss this with my doctor.

10

wow. that is incredibly interesting. it might actually be that... a few nights before i started experiencing UTI symptoms, i poured a cup of water from my bf's tap water (sink in the bathroom - i was too lazy to go downstairs). 

11

Yea i would try only drinking bottled water for awhile and see how you get on.

12

Bianca  --  you can't buy it in the  UK :  you get it on g.p. prescription.  I used to be able to buy it from 

a lab in the South of England, but  they suddenly stopped listing it and explained that it was only to be

available from a g.p.

13

Hi Cherie,

Thank you so much for posting this.

I just got my lab results back. There is no significant bacterial growth. My primary doctor thinks it might be interstitial cystitis. I have an appointment with my urologist on June 6 where I’m going to find out for sure.

I think the over usage of antibiotics in April may have caused this. I never had this problem before: the constant urge to urinate. End of March I got a UTI. I went on three antibiotics to get rid of it. Did the full course of all three. Even after I finished the last one I still had symptoms that felt like a UTI. That’s when I saw my urologist and he told me that I likely have bladder inflammation and overtime I will feel better. Overtime I did feel better until this last week. I have the constant urge to urinate again.

Now I’m thinking I have IC. so the only treatment available is medication and changing of the diet? I’m not a vegetarian or vegan but if I have to make that change for my health I will do so. 

14

Hi Bianca.

 The urologist I saw was fairly young and with -it--seemed up to date--  Saw somebody else several years earlier when my bladder wouldn't empty--that was probably the start of all my problems. That guy was much older and treated me like it was "in my head " He gave me a prescription for the pills women take when they pee every time they sneeze or laugh. That was basically the opposite of my problem but all he had to offer. I tried one pill and didn't pee for several days--gained about 8 lbs-- it was a big mess. So forget that--just lived with it till it got to the point I wrote about yesterday.  I'm telling you about that first guy because he was well respected in my city-- I think he had been good in his day but should have been thinking about retiring if he wasn't going to listen to his patient and observe more closely. (Just rmember--it is YOUR Body-- You know it better than anyone else and you know when things aren't normal!!) So ask around to make sure you get somebody who is GOOD! They should do a cystoscopy-- which sounds scary but is relatively painless-- they insert a teensy camera inside your bladder and look around. Maybe you have already had this done? 

My urologist gave me a pamphlet about the  IC condition--there is a group on the internet that offers help, too--possibly found them through the pamphlet.(Have info if you need it.) I think there is only one drug specifically for IC, and it can cause hair loss-- not a good thing for me-- that is why I went strictly with the diet. What you can try before you see the doctor is to match up your symptoms with your food. For example, if you have some kind of meat for breakfast, and a burger for dinner, notice if your symptoms get worse. Probably the best comparisons would be a heavy meat day to a low meat day to a no meat day. Sugar is also acidic. If you drink a lot of pop, that could be your issue. Pop in general is VERY acidic. It could feel like I'm telling you things that sound like, "Well, there goes all the fun of eating-- all the good foods will be gone from my life!" 

THAT doesn't have to be the case. Once you learn which foods are acidic and which are alkyline, you just have to start figuring out what is the proper balance for YOUR own body--and believe me--you can tell pretty easily by counting how many times you feel like you have to go to the bathroom, and of those times, how many  times you actually go more than a few drops... The more alkyline your diet, and the more liquid you include, the more times you go to the bathroom will mean you "really have to go! " But a lot of liquid by itself may not help if you ingest too many acidic drinks or food. 

You CAN do this Bianca! I forgot to tell you the one trick that makes it all easier and allows me to eat more normally.  I scoured the alkyline food charts for foods that I liked and wouldn't mind eating more of. It turns out that WATERMELON is one of the most alkyline foods around, so in the beginning, I ate a lot of watermelon whenever I felt out of balance--even in the middle of the night if the burning was keeping me awake.  Eventually realized that watermelon had a lot of sugar, so searched the charts again and realized lemons and limes were another great source. Seems odd--because they are citrus, and would normally be considered acidic, but somehow, once inside your body they have the opposite effect-- read that many places, and it works. I now religiously keep lemons and limes on hand so they can be cut up to squeeze into my water at all times. If you do nothing else. Try that!   

Hope this info helps and that you get a great doc like mine who understands it is NOT in your head but completely in your BLADDER!!  

15

I am sorry to hear about your plight. Try taking cranactin tablets

3 to 4 tlmes daily.I also had a similar episode. Its now under control. Bye.

16

Bianca,

I made an account just so that I could reply to you because I am literally going through the same thing except for me, about a month longer. This has been taking over my life and I feel helpless like you do... but I think our situations are extremely similar. I am a 23 year old female and from what I read on one of your posts on here you are around the same age as me?

I got a UTI towards the end of February and was put on Nitrofurantoin twice a day for a week. A few days after I finished my prescription I got contacted by the hospital saying that I am resistant to the Nitrofuratoin (Macrobid) and was placed on 10 days of Ciprofloaxicin. So just like you, I took long courses of antibiotics and I would say the second course of Cipro was pretty strong (500mg twice a day for 10 days).

I never experienced any pain or burning with this UTI (I get them at least twice a year), but I get a strange feeling when I urinate. That seemed to go away with the first round of antibiotics, it was really just the frequent urination and sometimes urgency, which are accompanied by weird sensations in my lower back. My urine flow also became very weak... basically ALL of the symptoms of a UTI except pain and burning and blood.

After being pushy with my Provider I finally was able to get two more urinalysis/cultures which both came back with insignificant levels/non-infective which is what the nurse told me when she called me back with my results. Also got a kidney ultrasound which came back clear.

I got an appointment with UroGynocology and they gave me a urine hat (it measures volume of urine) and a diary sheet for 3 days and I have to record how much water I drink, and how much I went. My appointment is around the same time as you but with UroGynocology. I am going to ask to be referred to Urology.

I am tired of waking up 3-4 times a night to pee a little bit. The weak stream of urine is also very worrying to me. I was told by an ER doctor that my bladder is just probably inflamed from the antibiotics and maybe this was a strong UTI. 2 months later I am still experiencing my symptoms.

And like you, they actually went away for like a week, and then now it seems to have flared up again. I am the type to over analyze and stress out so I may be worsening my symptoms.

I have two theories though...

Have you ever read about biofilm? It's when bacteria are able to grab ahold of your bladder wall and create a slimy layer which your body, or antibiotics cannot attack. During this period you may not feel any symptoms because bacteria outside of the film have been flushed away and the biofilm is dormant. It may be the cause of your urinalysis and cultures coming back with insignificant numbers which make it clear. But the truth is, even with an insignificant level, people can still have a UTI.

The other is IC, as you are suspecting with your symptoms.

Or, it could totally just be an inflamed bladder. I hope that your urologist is able to confirm this. I hope that I will be able to see a urologist real soon. I am tired of being rotated to everyone but who I would really like to be seen by. At least they aren't giving up on me yet, haha. 

Please keep me posted on your journey as, like I said, I feel that we are having very similar experiences with our UTI.

 I hope that you feel better real soon. It's no fun going day to day thinking about how your bladder feels weird or full but only to go a little and be reminded of your symptoms. Then night time when you lay down and have to pee, lay back down and feel like you have to pee and you just have to force yourself to ignore it so you can get some sleep.

I apologize for the LONG post, but I hope that in a sense it gives you comfort knowing there are people out there experiencing the same thing as you are. I know it gave me a sense of comfort. Thank you for taking the time to read this if you made it down here

17

Hi there,

I am so glad that you have reached out. I'm 24 now. To be honest with you, this whole experience has been incredibly lonely for me. I haven't met anyone who has gone through anything remotely similar and the family and friends that I talk to about my condition just don't 'get it', no matter how sympathetic they are.

Both your theories are interesting and I actually share them. I think either this is caused by the culture showing a false negative when really there are remnants of bacteria remaining inside OR this is purely bladder inflammation. I think the overuse of antibiotics in such a short period of time messed up with our system. That, combined with a really horrible UTI. My urologist, on the first visit, told me that I must have had a bad UTI that caused my bladder inflammation. He was not worried at all and said that my symptoms (mainly urgency) would go away in a short period of time. I'm assuming someone from the medical profession isn't going to blame antibiotic use as the cause of the inflammation, but I still believe it may come down to that.

I spoke to my friend's brother, who is a doctor, and he said that if was caused by the UTI and/or antibiotics, it is a good thing, b/c the damage is reversible and it is not due to an intrinsic problem.

Today, I feel a lot better than I do yesterday. I would rate my feelings of discomfort/urgency today as a 1/10. Maybe it is just time that has passed that has caused this, but I began drinking marshmallow root and leave tea and bought the marshmallow root tincture to add into my water. It might be helping (I read online it would). I also bought Serrapeptase and am taking turmeric shots as they are anti-inflammatory. I recommend you look into these products as well. If our problem is inflammation then we have to be taking stuff that are anti-inflammatory.

I think it is an incredibly good idea to see a urologist. They know best in this type of situation. I also asked my primary doctor to give me a referral to another urologist too to get a second opinion. In this type of situation you want to be 100% certain. 

I am also thinking of maybe sending my urine off to a lab that does a more thorough examination of the urine and actually leaves it for a few days to see what collects to definitively rule out the possibility that this is just a UTI.

The reason I don't think it is a UTI (aside from the negative cultures that came back) is b/c the last doses of antibiotics they gave me did absolutely nothing. In the past, when I would get a UTI, I would feel relief about 2 pills. I think what I have is closer to IC, but I'm hoping it isn't IC b/c it seems like a life-long issue.

I wish you the best of luck and we should definitely stay updated on each other's journeys.

18

Thank you so much Cherie.

I really appreciate all of your advice.

I don't want to risk losing my hair, so I will definitely try other remedies first, such as changing my diet and using anti-inflammatories. I already started using the Marshmallow tincture you mentioned as well as the tea. 

I am going to have a cystoscopy done next week. Hopefully my urologist will be able to help me. He is young and seems 'with it' but on our first visit he did seem to attribute part of my symptoms to my thoughts and my stress. I understand that stress can worsen the symptoms but I really feel that my problem was caused by the UTI I had about 2 months ago and the excessive use of antibiotics I had during that period.

Wishing you great health and thanks again.

19

Just a PS-- Bianca-- that particular medicine may make SOME of your hair fall out or thin, but I don't think it is like Chemo. I have thyroid problems which already causes some thinning and didn't want to add to the problem. Just wanted to clarify that point. 

Cherie

20

Sorry for the double reply but I’m doing some more research on biofilm and I’m starting to believe this is what’s going on. I’m scared though. How does one get rid of bacteria hiding in biofilm?